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It's not intended as judgement. So don't even try and turn this discussion into another venue of what's wrong with the overall situation in this country. I'll rip anyone's face off that views this as another trough of victimhood on which they can build their pedestal. I am serious about this. It's too important to me.

My dirty little secret is that my "brain" just doesn't work like it used to.

I'm not struggling with dementia as I understand the definition. I know my name. I know what day it is. I know where I live.

But if you ask me to look at any issue beyond it's surface level, I become confused and withdraw. If you ask me to seriously analyze an issue down to it's second or third level, I can't maintain the focus. If you disrupt my daily routine (3:00 p.m. lay out tomorrow's pills, set coffee up for the following morning) a routine which I recognize I have constructed more as a defense to function daily than a matter of convenience, my world becomes unmanageable.

I'm not a stupid person.

I think I am reasonably sane.

But with each passing day, while the changes are minuscule and beyond notice, cumulatively the change is undeniable.

We've talked about this before in these forums. Usually we refer to it as "brainfog".

I saw this brief snip on MSNBC. http://www.msnbc.msn.com/id/15107854/ I usually don't pay much attention to these sorts of news stories because if they have any real merit, we've learned about them months before in these forums. The media also has a tendency to abbreviate things in such a manner that the real meat is not communicated accurately.

The story reminded me of the thing I struggle with the most in "Living With HIV".

This is deffo a real thing eh? and I think will become more and more a topic of long-term survival, not the dramatic brain stuff that goes with encephalitis and HIV-related dementia complex etc, but the long-term grinding down of facaulties. It may be (a) the virus affecting the brain or (b) the immune system causing damage upstairs or (3) HIV drugs. Or all three.

It's an area that needs more focus. We's pushing it in the UK with the British HIV Association. There's not even really a diagnostic framework. I do find though, that half an aspirin a day keeps the fog at bay (a bit) prob cos it damps down the inflammatory effect of white cells in the brain (which are toxic toxic in large quantities) but know this is just a sandbag, untested (it should be tested) and not the whole story. There's a whole thing to look at on blood supply which is more about heart & circulatory health, for example.

This is a very real problem with me. I noticed it as I was recovering from PCP and thought it would improve as I got better. But I just don't see it. Like you said, anything below the surface and I just get confused. My phones were down for 8 days. The repairman came today and explained to me how the lines got crossed (something about magnetic fields). I was completely at a loss. Like you said, it's incremental. Everyday something seems to chip away at the gray matter.

I love to read. I love mysterys. Especially if they take place in Los Angeles. There is something very noir about an LA mystery. Anyway, I'm reading a book by Joseph Hansen and whenever I pick it up from where I last left off, I am at a complete loss. I have to go back and reconstruct what I've previously read and go over each character to make sure I've got everyone on the right page, so to speak. It's as though I'm starting all over again.

Dementia is a trait that runs in my family. The added burden of the virus vs.the meds vs. long-term survival scares me.

I have something that may be similar, as I have trouble with focus more now then I ever had before. I don't know , but I always attribute it to normal aging. Maybe I'm wrong, I can't be sure. But when I read your post It definitely "struck a nerve"...I'm 49, and have been on hiv meds for 22 years.

But you bring up an important point. And it has always amazed me, why no one in the medical community has asked me to be part of a study. I am willing, but there seems to be no "market" for it. I have always told my DR to let me know of anything...but nothing has ever come up. I'm ready, able and willing to whatever I can so that we can learn, and make the world a better place for those future long-terms.

Thanks for bringing this up. I hope it starts something that can help everyone.

As you might recall from our last conversation about BF, (Brain Fog) I was having a severe bout of the fogs. It seems really strange, but when I dumped the Olestra based Kaletra and went to the pill form, much of the severity of the fog left, and my mind seems to work dramaticly better than it did before. I will however point out that this is only an observation and there is no way I can prove tht this had anything to do with it.

One of the things that I have done to help keep the fog at bay is to use my mind in games on the computer. I think the repitition of game action with word games keeps my mind working better than if not. I know I used the computer to recouperate from PCP fog, and I still use it for some exercise. What ever games you choose, make sure they make you think. Word games are my favorite and keep me thinking smoothly. I know that it is a pain in the ass, but analytical thought really helps to keep the cob webs out of the brain and I cannot advocate enough for mental exercise. Solve those problems, and keep going. Even though sometimes it is not easy, you must keep going, otherwise.......... Who knows.

I agree with RAB here, and I think it is vitally important for us to keep the search on for someone to pay attention to this, or else there are going to be a load of long term survivors in a few years, walking into walls, and nobody will have the slightest clue as to what took place.

When we had our last discussion, I went to my doctor and set up an appointment, however, the wait took so long for the apt., I cannot for the life of me remember why it never took place. Odd isn't it.

In constant confusion.

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

I have the same problem. I make lists all day long of things I need to do, but sometimes I forget to look at the lists. I have messages to myself all over the walls of my office. Maybe we are just getting old?

Sounds a little like me... Most of the time, I believe I am somewhat focused, and don't have a problem. Then there are times, when I will be talking to Ed, And I will completely go blank mid-sentence !! I will sometimes have to ask him, what the heck we were just talking about. It doesn't happen that often, but it still happens.

I am still working full time. I don't have any problem at work, still can handle any emergency situation, very professionally, and without problems.

I sometimes find myself having to write myself notes. I will tell Ed, I am going to go shopping, and when I get there, I sometimes forget, what the hell, I went there for in the first place. Haven't lost the car yet, in the parking lot !! There are many times, when I will not respond on this site to posts, because I just can't get it right on the page.

It would be easy to say "I am having an "Anheiser-Busch moment", except I don't drink. My biggest problem was the meds.I sometimes forgot an hour later, whether I had taken them or not. Got that problem solved for now !....

I will have to talk to the doctor about it next week, on my next appointment, But you are certainly not alone...

Ray ( What the hell did I just type)

EDITED....By the way, thanks for the link. I knew I forgot something !

While I haven't had the disease quite as long, I could tell a difference just prior to going on meds. I definitely had some fog issues, but since becoming undetectable, I feel like my old self upstairs. I find this subject particularly scary as it runs in my family too. What I do today, is take fish oils, which help with inflammation and provide the building blocks for the brain. In particular, a fish oil high in DHA is best for this. At the very least it can be preventative. With all the benefits fish oils have both cardiovascular and mental, HIV folks should be taking them. You're not alone, RAB.

No...you are not alone. I am exactly the same way. I have a very routine day, and if that changes I have trouble coping. Which pisses me off, and scares me at the same time. I used to work in the hotel industry, and each hour was different, and I was able to multi-task the multi-tasks. Now, if anything changes in the day, it is horrible. My anxiety goes up, and I feel confused.

I have also noticed mental changes. I don't feel as smart as I used to. I forget things, I can't think of words mid-sentence, I've gotten my doctor's appointments confused.

I sometimes think it is the meds, sometimes the virus, sometimes just lack of use compounds the fog.

I've got it to....when the virus progresses and breaks the barrier to your nerve system and your brain, you lose some things....ill just speak from my experience with this...

like me, my brain catches things in memory, but i cant recall it when i need it to. I too, get overwhelmed with things, example....lots of reading, im good for cple sentences then im lost, confused, and easily agitated. I have spoken with doctors in depth had all kinds of tests ran, etc its from the virus breaking through that barrier. i forget things that i shouldnt, and lose memory in the blink of an eye.

i almost burnt the house down a week ago, making microwave popcorn for my little one, i put the bag into the nuker, turned it on, and just that quick i forgot about it it burst into flames, filled the house with smoke before i could comprehend the cause of it.

ive stepped into the bathroom only to get lost, forgetting that i was there to take a piss. Ive cooked dinner for the family on like a monday, putting the food into the oven, my wife would remove it, and we will eat. But days later i will suddenly get up and run frantically to the kitchen because my brain recalled i put the food in the oven, resulting in my wife to calm me down, with the play by play for my remembering purposes.

You place forms that have to be filled out in front of me, they create anger and rage, simply due to the overwhelmed feeling i get trying to recall what the ask for. by trade i used to program and operate robotic welders for the auto industry, i was a computer geek, i've since lost that. Doc says it may improve, but will never fully regain its previous normal state. No matter how routine things can be made, i still find myself lost, confused, and forgetting things.

That happened to me when I came back from Montreal. Parked in the long-term parking lot and I ended up walking up and down the rows flicking my car keys and listening for the "beep" when the doors unlock. Scared the bejesus out of me.

One thing I have noticed is that it takes me longer to focus and concentrate on things...my attention span seems to be dwindling...I also am experiencing some short term forgetfulness, but the next day I can remember things I could not remember with the first 5 minutes...

Rocky, It definitely is not you per se. I too have trouble like this a lot, and until recently, just thought that it was me. It wasn't until joining these forums, that I heard for the "brainfog" It was stunned, because that's exactly what it is, a fog that prevents one from being fully cognizant on occasion. It's difficult even to pay attention to what some one is saying, because after awhile they begin to sound like Charlie Browns teacher. Just try to make the best of it, that's all any of us can do.

I have the same thing and until you posted this topic, RAB, I thought it was just me.Thank you for this post! I wanted to say something about this myself, but I had great difficulty trying to put in to words the way I was feeling.

Me, too, Rocky.I'm having one of those days today.It's frustrating.I was listening to a radio talk show hosted by a doctor a couple of weeks ago, and he was talking about the daily use of ibuprofen to stave off different types of dementia. He mentioned that it was being studied, mainly because many arthritis patients use ibuprofen daily, and it's apparently been documented that fewer of these patients suffer from dementia. He went on to say that they are not yet sure if this has to do with the actual use of ibuprofen, or if it has something to do with the altered physiology of simply having rheumatoid arthritis.Have any of you heard of the use of ibuprofen to prevent dementia? I googled it and found a couple of things, but nothing sounded very conclusive.

Maybe the phrase misery loves company isn't the best, but it's reassuring to read I'm not alone in this struggle.

I'm glad the research is going on at JH I guess, maybe it will provide some additional insight into what it is we all seem to be experiencing. Though my MRI showed nothing the research is still a step in the right direction I think.

Somedays it just takes so much energy to wade through the fog and still function on a reasonable basis, it leaves me feeling cranky and bitchy (imagine that? ME? Never! ).

Whether it's the virus, the meds, the toll of aging, emotional distress, or a combination of some/all of those, we're just going to have to keep moving forward and adapt as best we can. (So help me if I start drooling and "walking into walls" I'm expecting you all to be right there with me dang it! I ain't suffering this alone! )

Thanks again (for the lack of a better sign off) for your confirming support.

RAB

(Who's wondering if he put deodorant on this morning or not? Suddenly he can't remember!) (Sniff Sniff) (Yep I did! )

That article describes my Uncle to a tee. However, in the 7 years he has been +, I noticed this happening to him, and then he sort of hit a Brain Fog plateau. It didn't get any better, or worse...just sort of there.

I have been wondering this same thing about myself for some time now. I'm glad I stumbled onto this thread. I was attributing it to old age as well. I have been fighting the virus for two years (this is almost my anniversary) and I find that my short term memory is beginning to suck more than ever, but a day or two later, I have a perfect clarity of the situation. I thougth it was the stress of a new job, but alas, I don't think so.

I have always operated from lists, so it wasn't noticeable at first, I thought it was just because I was tired (recently became anemic) but other times, I'll be inside of my head, just observing what goes on outside of me, unable to connect with what's going on around me. It's almost like I'm watching my life on a television. kinda strange.

WOWI can't believe I'm reading this.I thought I was just losing my mind. Damn,now what. I am On Sustiva and Truvada.Only for a little over a year. I have probably had the virus for a very long time before getting tested.I have noticed a signifagant change in my mental health and physically since 1995. Thank you for this. Does anybody have any advise as to how to deal with this?

I experience this as well. I always put it off as "Chemo Brain" but the bottom line is I've lost alot of concentration.Switching to kaletra from Sustiva helped quite a bit, but I still have to do things like keep a piece of paper with my own phone number on it.

All I have to say is WOW. I thought it was jjust me. I would always call these "Brain Fogs" "Brain Farts" same thing. I realy did not think of it to relate to HIV or Meds just that I was getting "brain Farts" due to drugs I used to do back in the day. I dunno. But this is very interesting. Thank You Rachel

Yep me too, I can agree with all of you about most of the problems at various times. The intensity varies with me, usually I've noticed, worse when I'm tired or stressed. It was frightening at first and I dreamed and worried about any and every possibility, then I read in someones blog on here, sorry but I can't remember whose , about "brain fog" and knew straight away that that was me. I've always been a bit of a dizzy queen when it came to remembering things and have used lists and notes for as long as I can remember, (how long? lol), but to find myself looking at the list and then instantly forgetting what I've read was quite frightening and all the medics could say was that it was "probably stress related". There is also the concentration problem, there are times when I find it difficult even to read a book, having to read and re-read sentences to make sense of them. I thank god that I'm not like that every day and hope that someone somewhere comes up with an answer before it gets any worse. It's also comforting to know that, like the rest of you, I'm not alone.

By the way, my life has depended upon the humble "post it" note for many years now, I've also got a natty little programme for my PC which does exactly the same thing on screen. It's free and can be downloaded from www.zhornsoftware.co.uk

I know we did this once before, and the thread was astounding then. Now however, there seems to be the same intensity, yet few of us are repeats from that conversation. I would love to compare the two, but don't know how to get a thread reference from the archives. I think it was simply called "Brain Fog".

Just John. I must thank you for the computerized post-its. Downloaded and wow, thanks loads. I would imagine that this offering could make quite a bit on donations from this site alone. Again, thank you so very much. Now, what do I do when the screen can no longer be seen......

All you guys that are new and entering into this thread; welcome, I trust you will find it comfortable here and stick around for a while.

In Love and Support, (when I can remember what I am doing)

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

I know we did this once before, and the thread was astounding then. Now however, there seems to be the same intensity, yet few of us are repeats from that conversation. I would love to compare the two, but don't know how to get a thread reference from the archives. I think it was simply called "Brain Fog".

Hello Tim,

I believe this is the thread you are referring to . ( from the old forums) It was started by Ann...

;DTeeheehee, Moffie when your screen goes yellow it's either time to get the antistatic cleaner out or; just right click on the top bar of the sticky note, select 'sleep' then 'custom' and it will disappear until the time and date that you wish it to you reappear. You can also change the colour of them so that they can be categorised.

If this makes you feel better...my brain has always been in a fog. But it must be something inherited from my parents. My mother always called my brother and I with the wrong name (and we are only two) or even by the dog´s name...I forget words, but my father was asking me the other day for "one of those white things to write on": a sheet of paper...Don´t worry too much. A sharp mind is boring and being a bit confused an forgetful can make you look extravagant and relaxed which is very chic.

Rocky...You always seem quite sharp whenever we speak or have met...Your attention to detail and completing tasks is outstanding and your concern for doing things the right way and the best way is most admirable.

Doing stuff such as reading, learning new things, crossword puzzles, etc. can all be quite helpful in keeping the brain working well, similar to how exercise helps our biceps or running assists our cardiovascular system.

Keep on truckin' Rockala, you're pretty perfect to me !!!

Jody

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"Wake up to find out that you are the eyes of the world". "Try to discover that you are the song that the morning brings."

oopppsss.... So that's the reason why.... I forget the name of the things, but remember clearly its definition..And also, I am in the middle of a conversation, and have this horrible feeling of I-cannot-for-god's-sake-remember-the-freaking-word-I-Wanna-say...

Scary...Jesus, Scary... I am a number freak, because of my work, and missing my memory..DO not wanna think about it.

I am so glad someone started this thread.I thought it was just me, or that I was just aging, and not too gracefully. I have noticed it in my writing. Mistakes I should be catching are showing up.Worse, I have that nasty habit of forgetting what I was doing, why I walked into a particular room, where I am going when I head into town, etc. It is like my mind just wanders off in a direction of its own, taking me with it no matter what it is I am doing at the time.I don't get "cricket bat" headaches, per se, but I seem to get headaches regularly. Usually a dull droning type of headache, but sometimes accompanied by sharp, stabbing pains behind my eyes. It feels like someone is shoving an ice pick into my eyes. It doesn't last too long, but can stop me in my tracks when it hits. Ibuprofin has become my friend.The list of "stupid" things I do are endless. Like starting five new projects because my attention becomes side tracked, forgetting what I'm talking about in the middle of a sentence, or having to reread something repeatedly because I can't seem to focus on what I have read. And for those do-it-yourselfers out there, I have measured, re-measured, and re-measured things as part of home renovation projects.My mother does things like this. She is 82. I'm not.I remember my mother's social security number, my driver's license number, my checking account number. But I can't seem to keep dates in my head, and names are evaporate like water on a griddle. I write a lot of things down so I can remember them later.At least I know I'm not alone and I'm not going crazy.

Peace,Mark

-------------------------It’s the good girls who keep diaries; the bad girls never have the time — Tallulah Bankhead.

This is what I wrote in the earlier thread. Things haven't changed much, except my typing is getting worse, at least sometimes.

I now remember having conversations with people, but not how those conversations ended.

Well, this has definitely got me firmly back in panic-mode. I had just about accepted that I might not die of AIDS at all or at least not for a long time to come but what use is being physically okay if my brain is going to fail? Sharp and analytical thinking is a key requirement in my profession (computing) and it obviously would then spell the end of my career. Don't think I would cope well with that.

Are there anyone who has lived long-term with HIV who has NOT noticed any 'brain fog'? Anything you can do to slow it down apart from HAART?

What I find interesting about this research is that there seems to be a large segment of HIV + people that all went on the meds during the same time frame (say 2-3 year range when the drugs were introduced). This seems to have created a large segment of patients who are going through the same phases during roughly the same time...

Im not saying the long term effects of any treatment are detremental, just that something seems to be happening to a lot of people at the same time (hence the large number of replies to this topic...

Are there anyone who has lived long-term with HIV who has NOT noticed any 'brain fog'? Anything you can do to slow it down apart from HAART?

Keyite,

The problem seems to be universal, and no I haven't witnessed anyone here who hasn't... On top of that, HAART doesn't do anything for the HIV in the brain, as it doesn't seem to reach that organ. So, HAART is not the answer, and more and more data seems to point to it being part of the problem in itself.

Maestro,

Interesting observation, but many in research are pointing to our respective ages, and simply ignoring our issues as aging related. Only recently through some of the studies, they are finding that time on meds isn't particularly significant, nor is the age of the HIV+ person. It seems very much an HIV problem and shouldn't be confused with time on meds. At least the respondents to this thread have ages and times since diagnosis that are all over the place.

Curious still....

Logged

The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

I went back and read the thread I started in the old forum (Ray linked to it - http://www.aidsmeds.com/Fusetalk/messageview.cfm?catid=5&threadid=23654&FTVAR_MSGDBTABLE=arc ) and nothing has changed for me really. Still get foggy days and clear days, still get the bad headaches. I still haven't returned to work and don't really have the confidence to try. If I could get a paid job I could do at home, in my own time (and jammies LOL) I'd go for it, but I don't even know where to start on that score. Ever notice some days when I'm really quiet? I'm likely to be lost in the fog on a day like that. How on earth would/could I explain this to a new or prospective employer? What would they think of me on days when I struggle to communicate because simple words have vanished from my vocabulary? It might not be noticeable here on the forums just how much I struggle some days, because you don't know how long I've been sitting here trying to find a word.

I do word and/or number puzzles just about every day and it does seem to help a bit. I also read every day and not just on the internet, I read at least a chapter of a book every night when I go to bed.

The memory thing is very peculiar. I know I know what I want to access, but it's like I just can't access it. Sometimes when I've "lost" a word, it will suddenly pop into my mind hours or even days later. Sometimes a word will pop into my head and I can't remember what I wanted it for or when. It's almost like a signal goes out in my brain to find a piece of information, the route to the information is blocked, and my brain-cells find an alternate route to the info and it can take some time to find that new route. Weird, eh? It's SO frustrating to know that the information is in there somewhere, but I just can't get to it when I want it.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Well, this has definitely got me firmly back in panic-mode. I had just about accepted that I might not die of AIDS at all or at least not for a long time to come but what use is being physically okay if my brain is going to fail? Sharp and analytical thinking is a key requirement in my profession (computing) and it obviously would then spell the end of my career. Don't think I would cope well with that.

Are there anyone who has lived long-term with HIV who has NOT noticed any 'brain fog'? Anything you can do to slow it down apart from HAART?

My job is all about analytical thinking, That hasn't really suffered. Just short term memory. You can compensate for it though. For instance. If you're setting up a small network, draw the thing out first IP's, hostnames etc. That way when you haven't a clue what IP scheme you were using you just look at your diagram. I literally walk around with all my phone numbers etc in a palm pilot. I've actually forgoten my home address before, yet I can still walk a customer through trouble shooting her CT machine while driving down the road drinking a cup of coffee. Of course if I tell her to call me back if she has anymore problems I have to look up my own cell phone number. *shrug* weird, a PITA but you can work around it.

It is the same for me, I don't feel like my brain is functioning at the level it did a few years ago. Little things throw me off.... this is not good for someone who is trying to do accounting work!

My doctor pooh-pooh's it when I have brought it up, just as he did the lipoatrophy (you look fine to me is his opinion). I'm considering leaving my I.D. doctor of 18 years, for several reasons....this kind of thing being one of them, but that's a different topic for a different time.

You're not in this alone, honey....it is affecting a LOT of us.

hugs,Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

I have wanted to discuss this for a while and I am really glad this topic is happening. As I teach, I have definitely noticed memory issues. If I am tired (quite frequently), it is harder for me to pull something directly out of memory. I just draw a blank. This can be really hard when you are in front of over a 100 students...

Anyway, there are a number of questions I have. First of all I would love for people to be more specific about what "brain fog" means to them. Is it difficulty remembering? Is it not feeling as alert? Is it having a harder time sorting things out that you know used to not be as complex? Is it bumping into things (sensory-motor)? Does it effect vision at all? What about clarity? Focus? Or staying on task? Does caffeine help? What about Aleve or anti-inflammatory drugs? Do certain things make it worse, such as lack of sleep, stress, etc.? Is there an emotional component?

Does "mental exercise" seem to help?

Sorry for all these questions, but as a prof. my brain is my job/work/life and I have a lot of concerns in this area.

I've not noticed these symptoms but maybe I've been in too much of a brain fog to notice! I do have trouble concentrating on long, complex reading material when I am tired, but I've always been that way. I often work nights and at 4:30 in the morning I just can't read anything complicated and usually grab an Entertainment Weekly if I have down time.

A couple of years ago I think I had some kind of neurological event. I completely forgot my home telephone number and not just for a few minutes. I had to look it up and even then it was unfamiliar. I was able to learn it again but it was unnerving because I had never experienced anything like that before. I've not noticed any memory problems since.

I was talking to a friend. I forgot what we were talking about (lmao) but i noticed as i got really passionate about what i was saying, it was like the words were in my head, but I could not speak the words, and stuttered a bit. Another weird thing that has happend to me the past year or so. Just thought I'd share.Love you allJeff

I myself have noticed in the last few months that its harder and harder for me to sit down and concentrate on putting a job proposal together..I may visit the job 2-3 times and rewrite everything down, Then when I try to figure the quote even tho everything is in writing right in front of me I go blank..I cant crunch numbers in my head as fast or figure yardage...I thought it was just so many hours with so little sleep but I think its more than that...I was also talking to my brother yesterday and I told him I cant remember much before 2002..Its rather bad at time but then the next day Im back on top of things and sharp as a tack..I was told it was the getting 40 syndrone..Im 39 now....lol